I've searched the threads, and there don't seem to be many recent follow-up posts about MCT and coconut oil. If you have tried this, could you let us know how it affected things?
(I am not an AD spouse but have various family and friend connections that have made me want to educate myself, and I stumbled upon this site. I hope I am not intruding on your wonderful community. I am filled with admiration for all of you.)
I have posted on the coconut oil thread. Still giving 1 T. MCT oil a day. He is better than last summer. Sporatic. We tried the new Accura and it caused behavior problems so with the advice of Neuro we stopped after 3 days. I am also giving 1 fish oil and 1 flaxseed oil a day. I do feel it has been worthwhile.
Dh is stage 3 (maybe 4). I have been giving him 3 or 4 T. of MCT Fuel in the mornings. He is doing better cognatively. Last week he had stomach flu and couldn't take it for 2 days. Boy, did we notice it (him included)! He had trouble remembering names, words, recent happenings, where things were in the house, etc. We are back on track now. I had been giving him 5 T. (1/3 c) but if he is under stress it seems to upset his stomach more, so I am giving a little less to him mixed with 4 oz of orange juice and 4 oz of water. That seems to help and we still have good results.
This is the direct link to the "coconut oil" thread - http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=1297&page=1 There are 11 pages of comments - the most recent was 4 days ago.
i can tell a difference with just 1 TEASPOON of coconut oil a day with DH. i have to ration it sometimes with incontinence issues but definately see a difference with such a small dose. i try to give daily-divvi
Swarfmaker, i slacked off a few wks ago with the 1 teasp coco oil as dh was having stomach issues -during that time the incontinence issues worstened more confusion and he didnt know my name. restarted the 1 tsp coco oil 2wks ago and hes using the bathroom again (YEA!)(just now, poopt on his own== calls me by NAME again and seemingly more alert. it is amazing.. i absolutely know it works for him..small miracles do seem feasible.. divvi
That's great news, divvi! I haven't used coco oil or anything else - I figure things are going so well right now (and he does have stomach problems often), I'll just let things be. So happys it's working for others though.
I have a brand new, unopened bottle of Ultimate Nutrition MCT Gold if someone wants it. I bought it after reading the posts here, but Claude passed away before I could start him on it.
good news Vickie,, but if you see any 'slips' get with the program. it has to be the mct and or coco oils as there are just too many of us here using to be a coincidence..i cant use mct oil at all. it gives really bad diahrreah even low dose. so i stick with coco oil for now. i heard imohr? say the axona increased myoclonic jerks in her DH so that will deter me from using that most definately.. divvi
divvi, I truly believe it will help. I'm just afraid of your specialty happening! He has always had stomach/bowel problems and it's a fine line to walk in even knowing what to fix him to eat and keep it all in balance.
I think it is on the coconut or axona thread. That was the problem I had with the axona. Perhaps if I had continued it longer it might have been ok but I am so pleased with the MCT and coconut oil and it is a lot cheaper, I did not pursue it.
Thanks everyone. I had previously read every post I could find here about it including every post in all 11 pages of the long thread :-) ! but was curious as to whether it seemed to continue to help, and if people were continuing to use it. Plus I thought it might be good to have a thread where people could keep updated about it and Axona.
I've had my wife on MCT Oil, 2 Tbsp per day, for the past couple of months (we are now on our 3rd bottle). I am not sure I see any improvement, but she seems to be tolerating it, so I will continue. I'm not ready to start Axona. The only "problem" she has with MCT Oil is that her stools are a bit softer. Mostly they are formed, but occasionally there will be an unformed soft mass, usually contained by the Depend.
if you want to try the coconut oil there is nobody on this board more suceptible to loose stools than my DH. i do give low dose and do counteract with lots of fiber/granola bars during the week which he loves. the tradeoff is worth it in my opinion. divvi
We are on day #3 as well with Axona...I am not sure if I should bother with Axona or keep using MCT Oil and Nutura Organic Coconut Oil...
My LO is still wearing pantyhose, and make up and I have no idea what stage she is in. She was dxed Feb 08 as EAOD. Her last MMSE IMPROVED since being on MCT AND Coconut Oils
As best as I can remember it was the terrible twitching/jerking for about a day and a half. I can't remember anything else unless it is in the post I made. Are you noticing anything yet? You may not.
most of us had the myoclonous jerking before the coconut oil/mct oil/axona started. axona seems to have aggravated imohrs DH's jerking if i understood right. i would not try it for that reason alone because my DH has MJ as well-. divvi
My DH has been on Axona for almost a week now. I didn't expect much additional improvement since I had been giving the MCT oil for quite some time and it had helped but I'm thinking I see some more improvement with the Axona. I'll know more after he has been on it for 3 or 4 weeks. I like the idea of giving Axona rather than the MCT oil because the dosage and times to give have been determined in clinical trials. We were just guessing with the MCT oil. He, however, does not like the taste. He said he'd rather have that oil back in his oatmeal. :-) He will drink it, though, since it's supposed to help his memory.
We are on our 4th bottle of MCT Fuel..I wasn't sold at first, but now believe there is a difference..more than that, G thinks there is a change for the better. We still do the roller coaster, but better now, I do believe. I'll accept all positive changes, no matter how small.
swarfmaker, that's an interesting observation about the eggs. My very good internist told me that she has two eggs every day because she thinks the B vitamins and the excellent complete proteins are brain healthy. I've been eating two eggs for breakfast for a couple of years now and noticed after about a month of trying it that I felt better. Now if I don't have eggs, I notice that I don't feel as good.
I mix the MCT oil in oatmeal if I make it, or eggs (about 1 tsp) - we like scrambled egg sandwiches. Since he sleeps so late, he often has a bagel of which he uses coconut oil instead of margarine, then puts the jelly on. He is diagnosed amnesic MCI and I definitely notice better recall when we remember to take it.
HB has sensitive digestive system - doesn't take much to give him diarrhea so we can't give much at once. As long as it is mixed into food, it doesn't seem to bother. Give any more than 1 tsp at a time it will effect him.
My husband, who is diagnosed with Lewy Body Dementia, takes about a tablespoon each of MCT oil and coconut oil. It has at least stabilized him--in terms of being able to manage complexity (such as travel plans) he isn't much below where he was a year ago. It hasn't helped as much with the difficulty getting things done and he is showing a few signs of beginning to exagerate things and get agitated. He's making plans to travel to Spain in July, partly with our 19 year old son (who is ADD and doesn't pay attention to the world around him) and partly alone. I have some worries, but my husband is doing well enough that the plan seems reasonable to me. (I don't want to go--don't enjoy that kind of travel much and will be in the middle of huge home renovations.) I suppose what I will do is print out all the information they need (hotels and travel) in order and make a copy for each of them; if I have done that organization for them they can probably manage.